Tag Archive | hydrocephalus

The Next Goalpost of Milestones

Since Little Miss Minion starts pre-k in a few weeks, I figured I would go through the CDC milestones for 5 year olds and see how she’s doing. I posted a while back for the 4 year old milestones and she’s met all but one (catching a ball), so I wanted to see her progress toward meeting the next set. The following list is from the CDC’s website with my own notes after each entry.

Social and Emotional

  1. Wants to please friends-yes. She’s fairly good at sharing with others and plays with other kids at school.
  2. Wants to be like friends-yes. She likes to note similarities between herself and others, like hair color, shirt color, likes and dislikes.
  3. More likely to agree with rules-yes. Mostly.
  4. Likes to sing, dance, and act-yes. She constantly sings in the car and always gets up to dance whenever there is music. She is starting to frequently make up little storylines when playing with Mr Minion or myself, like “I’m eating soup (out of my pretend ice cream cup) because its cold outside. Brrr.”
  5. Is aware of gender-yes. She mixes them up sometimes (mostly for indeterminate things like a stuffed animal or cartoon character).
  6. Can tell what is real and what is make-believe-mostly.
  7. Shows more independence, such as visiting a next door neighbor by themselves-have not tried this, as I do not trust her to be outside near the road we live on by herself. She will happily go and talk to neighbors if they are outside.
  8. Is sometimes demanding and sometimes very cooperative-100% yes.

Language and Communication

  1. Speaks very clearly-I don’t generally have trouble understanding her, but I think other people sometimes do.
  2. Tells a simple story with full sentences-yes, I’ve been happy to see that she almost always speaks in full sentences (it’s the English teacher in me).
  3. Uses future tense-yes. She likes to explain what we are about to do. “We are going to have dinner and after that, we can watch a movie.”
  4. Says name and address-she knows her first and last name, but only remembers her middle name about half the time. We don’t really use it, so I am not surprised. We never say our address either, so I guess we need to work on this one too.

Cognitive

  1. Counts 10 or more things-yes.
  2. Can draw a person with at least six body parts-not frequently. She usually gets a head, eyes, mouth, and body, but sometimes adds feet, hands, shoes, fingers, etc.
  3. Can print some letters or numbers-she can reliably trace all her letters, but can legibly write several on her own. She can recognize all the numbers and letters. This is one that will we will be working with her on this year.
  4. Copies a triangle and other geometric shapes-yes-when she feels like it. This will also be something that we work on this year.
  5. Knows about things used every day, like money and food-yes. She got really excited the other day because I had some change in the cupholder of my car. “You have MONEY, Mama!!”

Movement and Physical Development

  1. Stands on one foot for 10 seconds or longer-no
  2. Hops, may be able to skip-can definitely hop. I don’t think I have ever seen her skip
  3. Can do a somersault-she is close—I’m worried about the rolling part putting pressure on her shunt and causing pain.
  4. Uses a fork and spoon and sometimes a table knife-yes, she has started requesting a knife to cut her own food.
  5. Can use the toilet on her own-yes.
  6. Swings and climbs-yes!

All in all, I think we are in pretty good shape to start pre-k!

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Little Miss Minion’s Due Date

Today was Little Miss Minion’s due date, back in 2015. We stopped using this date to adjust for her prematurity once she turned three, but I still have a wistful feeling whenever this date rolls around. What would she be like if she wasn’t born so early? Would she still have gotten sick in the NICU? Would a slightly more advanced immune system have fought off the infection and kept her from developing hydrocephalus? Would she have a little brother or sister by now, if my pregnancy with her hadn’t been so complicated?

May 14 is Little Miss Minion’s day. It is the day we celebrate her birth, however early and terrifying it may have been. August 3 is another happy day—her Gotcha Day—the day we brought her home.

August 6 is my personal day of remembrance and mourning. Of mourning the loss of what my pregnancy was “supposed” to be. Of scrapping Birth Plans A-Z in favor of Birth Plan-Nobody Dies. Of spending my first nights as a mother in a hospital room, dazed from the magnesium that was keeping me from having strokes and/or seizures, with my baby on a different floor of the hospital. I mourn the day I was discharged from the hospital without my baby, who was too small to come home yet. I mourn the nights I spent that summer when she was in the NICU, pumping every three hours and falling asleep with the machine on as I watched episodes of Good Eats to try to stay awake.

But I remember, too. I remember how tightly those unbelievably tiny fingers and hands gripped my thumb. She would wrap her entire arm around my thumb and just grip it when I would kangaroo her (kangarooing is skin-to-skin contact between parent and child). I remember how she was forever pulling her nasal cannula out of her nose and the two tubes would come down by her mouth and make her look like a tiny vampire. I remember how hard she fought the infection, sepsis, and meningitis. I remember standing by her crib all night after she came out of surgery for her first shunt placement, determined that if she woke up from the anesthesia that night, she wouldn’t feel alone. I remember the feeling of elation as we brought her home. I remember being so proud of how hard she worked in physical therapy and speech therapy.

 

And I remember how, when I put her to bed, she grabs me for a huge hug and says “I love you, Mama.”

 

Quoth Little Miss Minion

Much like Edgar Allan Poe’s famous raven (quoth the raven: nevermore), Little Miss Minion has some phrases that are all her own. Please find a list here for your entertainment.

I’m a octopus officer. (She wanted to be a cop for like five minutes tonight)

Green beans go! (Green traffic light means go)

It was an assigent. (Accident)

Are you going to the hopsickle? (Hospital, where I volunteer in the NICU)

Is that your torn snickel? (Turn signal)

Are you frussrated? (Frustrated)

Are we waiting for the children? (Not really sure what this means, but she’s always waiting for the children or going to play with the children)

Squints at me while attempting to do the “I’m watching you” hand movement of two fingers pointed at your own eyes and then one finger at the other person. She can’t figure out how to do the two fingers by themselves, so she ends up kind of waving at her own face and then pointing at me, while squinting. It’s much less dramatic, but way cuter.

While listening to Siri beatbox yesterday: Mama, can I have catzenbooten again? She’s terrified of Siri but she wanted me to make her beatbox and sing part of bohemian rhapsody.

This is a fun age.

Little Miss Minion’s 4th Gotcha Day

4 years ago today, Mr Minion and I watched as the wires and stickers that had monitored our baby’s heart rate, oxygen levels, and respirations for the past three months were removed. We could see her whole face clearly, without the tube that had gone up her nose and into her stomach. We could pick her up and walk more than a few feet from her crib, something that would have been impossible due to the wires that monitored her vital signs. I vividly remember holding her carefully in my arms and slowly spinning in a circle near the large window in her room in the NICU that we had called home since May.  

As we waited for the discharge paperwork to be signed off on and for our nurses to go over instructions with us, I kept expecting the next person to come into the room to tell that there had been a mistake. That we couldn’t take our daughter home yet. We packed up her tiny preemie outfits, the mobile we had brought her to put on her hospital-issued crib, and her bottles. We also packed the jars of protein powder that we would have to supplement her bottles with for the next several months, and the diapers that were only slightly smaller than my cell phone. We packed her special issue Ultra Preemie bottle nipples, since she was still unable to handle the regular Preemie ones that were available in some stores.  

When our nurse finally came in and asked us if we were ready to head out, I could feel my eyes burning with terrified, excited, nervous, and overjoyed tears. We had arranged Little Miss Minion in her car seat and strapped her in, using rolled up towels, blankets, and washcloths to make sure she was secure. I carried her through the door of her room in the NICU and we walked through the unit, with Mr Minion and our nurse helping to carry the rest of her stuff. As we waited for the elevator to arrive, I waited for someone to run through the double doors with the news that we had to stay. The elevator arrived and the doors remained closed. We walked through the lobby of the hospital, seeing other parents leaving with their two day old full term babies as we left with our 3 month old, 5 pound miracle, who had already survived a Group B strep infection, meningitis, sepsis, and one surgery to implant a shunt to control the hydrocephalus she had developed as a result of those illnesses.  

When we made it to the front of the lobby, I tilted my head to look away from the Maternity Welcome Center, something I still do each time I visit the hospital for my volunteer work. We turned to walk through the vestibule that led to the parking garage and my daughter felt fresh air on her face for the first time since she had been born. We packed her things in the trunk and snapped her carseat into the back of our car. I rode in the back with her, and we stopped to get McDonald’s on the way home for lunch. The packaging was Minion-themed, and I still have a picture of it somewhere.  

While the memories of her birth and the immediate time before and after are fuzzy, thanks to the magnesium I was receiving by IV to prevent seizures or strokes, her Gotcha Day is carved into my memories with a chisel and I will remember every tiny detail of that day for the rest of my life. I will also remember how, when we took her for her first pediatrician visit a few days later, I got a compliment from a woman in the lobby who saw my ridiculously tiny baby and assumed she was a newborn, and said that I looked amazing and she couldn’t believe I had just had a baby. Since Little Miss Minion was three months early, I hadn’t really ever definitely looked pregnant, so after she was born, I looked mostly the same, except less puffy and swollen from the preeclampsia. I had only gained about 15 pounds, and between the stress of the NICU and exclusively pumping, I had lost about half of that. I just said thank you, laughed a little, and darted into the well-baby room to escape from the germ-filled waiting room. 

When I look back on where we started, I am amazed all over again at the tenacity of a 1 pound 14 ounce baby, born 3 months too soon, and the marvels of modern medicine that allowed us to bring her home. It solidifies my yearning to return to the NICU as a nurse, and makes me treasure my time spent there as a volunteer, speaking with parents who have found themselves in the NICU.  

Happy 4th Gotcha Day, Little Miss Minion. I’m so proud of you and everything you have overcome.

 

Pre-k starts soon…

Little Miss Minion will be starting pre-k this year at school, which means that next year, she will be starting kindergarten! In an effort to make sure that she is ready next year, I took some time to go through the CDC checklist of things most children do by the time they turn 4. Since LMM is 4 right now, I figure this will give us plenty of time to get official assessments if we need them. Our school district requires an assessment before kindergarten anyway, but since LMM has had some delays before, we want to make sure we catch any issues before they get too big.

According to the CDC, this is the list of things most children are doing at LMM’s age. I’ve added my own notes after each one.

  1. Enjoys doing new things. LMM loves new things! She is always excited to go somewhere new or try a new food.
  2. Plays Mom and Dad. She has started carrying around one of her baby dolls and shushing it or giving it a bottle and a nap.
  3. Is creative with make-believe play. The other day, she told me she was playing with her friends at school and then there was a dragon and everything was on fire. I think this qualifies 🙂
  4. Would rather play with others than alone. She spent 45 minutes over the weekend playing doctor/vet with Mr Minion, myself, and a collection of stuffed animals. We are all healthy.
  5. Cooperates with other children. I think she shares as much as one would expect from a small child. She has several close friends at daycare and a Best Friend.
  6. Often can’t tell what is real or make-believe. See dragon story above.
  7. Talks about likes and interests. She likes to announce her preferences for things like food, colors, drinks, and activities. She also remembers which of those things are liked or disliked by myself or Mr Minion.
  8. Knows some basic grammar. She occasionally messes up past tense verbs, but is getting better. We never baby talked her (its against my DNA, as an English major), and I think it shows.
  9. Knows songs or poems. She is always singing to herself in the car on the way home. She also likes the Daniel Tiger songs about everyday activities and will sing when appropriate.
  10. Tells stories. Its sometimes a little hard to get her going, but then she will just talk and talk. She likes to tell stories about what happened at school that day or something that happened in a movie we recently saw.
  11. Can say first and last name. Yes, and working on middle.
  12. Can name some colors and some numbers-Yes, she is very good at this.
  13. Understands the idea of counting-Yes, can count reliably to 15, knows some higher numbers, but not able to put in order.
  14. Starts to understand time. She understands “yesterday” means the past, “tomorrow” means sometime in the future, and is starting to know morning, afternoon, night (in terms of progression of time).
  15. Remembers parts of a story-yes. We read stories before bed and then she gets a turn to tell it back to us.
  16. Understands the concepts of same and different-yes. Every day, she will compare and contrast our shirts or outfits.
  17. Draws a person with 2-4 body parts. Yes. She draws about as well as I do 🙂
  18. Uses scissors-yes.
  19. Starts to copy some capital letters-Yes
  20. Plays board or card games-She likes Chutes and Ladders, Pretty Princess, and memory games
  21. Guesses the next event in a book-Yep.
  22. Hops/stands on one foot-Yes
  23. Catches a bounced ball most of the time-No
  24. Pours, cuts with supervision, eats own food-Yes

The only thing from this list that we really need to work on is the catching a ball. Not too shabby for a former 28 weeker.

The Sims: Kid Edition

If you knew me in high school, you might know that playing The Sims used to be what I did in my free time. In case you are unfamiliar with The Sims, it is a computer game where the user gets to create a character and then build them a house, get a job, get married…essentially control their lives. I built starter homes (and didn’t cheat), built massive mansions (thanks, rosebud and motherlode), threw parties, and went on vacation. Once The Sims 2 came out, I created virtual versions of my favorite book characters and of course, of myself. My sister made a picture on Microsoft Paint for me in which my Sims came out of the computer and killed me, spilling my ever-present bowl of popcorn onto the floor as they continued their rampage into the real world.

Since I am a Grown Up now, and have to juggle things like my full time job, my family, going to school, and volunteering, I don’t get to play as much as I used to. Which was all the time. However, I learned several things from spending most of my teenage years playing The Sims that I think are beneficial in real life.

  1. Sim-Meter. This is the little box in the corner that tells you how your Sim is doing. It shows if they are tired, hungry, happy, getting enough socialization, having enough fun, if they consider themselves clean at the moment, have to go to the bathroom, etc. Kids have this box too, but they don’t know how to tell you about it. When Little Miss Minion was a couple weeks old, I took a class at the NICU about how to take care of a preemie. Preemies have different needs and reactions than full-term babies, so the NICU hosted classes to teach parents how to interact with their babies. One of the things they taught us was that preemies usually have a specific reason for crying and it is just a matter of figuring out what it is. We had to become experts at “reading the Sim-meter” for LMM. Was she hungry? Tired? Was there too much stimulation? Too much noise? Too much movement? Unlike full term babies, who usually love being rocked, preemies (especially micropreemies) DON’T handle rocking well. We got to be pretty good at reading LMM and figuring out what she wanted so that she could rest and grow stronger. Now that she’s a rambunctious 4 year old, its a little easier to read her meter because she will mostly tell us what she feels. Due to her shunt, she has an extra line on the meter, and she isn’t great at reading that one yet. Since we can’t see it, we aren’t always sure whether we are reading it right either. For example, yesterday we went to see a movie in the theatre for the first time with Little Miss Minion. It was a lot of sitting and she was late for her nap and lunch by the time we got home. She said her head hurt and she felt “yucky.” This causes instant alarms to go off because of her hydrocephalus, but since we don’t have a personal MRI in the basement (anyone know where to buy one?) we have to guess. She woke up from her nap and said she felt better, her head didn’t hurt anymore, and she didn’t feel yucky, so we are hoping it was just from being overtired. But since we can’t see the Shunt Line on her Sim-meter, we were deciding what the plan would be if we needed to take her to the hospital.
  2. Free Will. There is an option on The Sims to turn off Free Will. This means that your Sim will do whatever you tell it to do without stopping, unless the Sim-Meter drops to red in too many categories and they have a breakdown. In real life, there is no such option. You can tell your kid to put their shoes on for three hours straight, but whether or not they actually do it is up in the air. Hopefully, your kid listens on the first try, but usually it takes a couple of reminders and maybe a time out for them to finally do it. We are pretty lucky in that LMM usually pays attention to what we tell her to do, but if she doesn’t want to do it, good luck.
  3. Fun. Your Sim-meter will tell you if your Sim is having enough fun (or at least, doesn’t hate what they are doing). Things that bring down the Fun-Meter include practicing speeches for Charisma points, doing homework, watching something boring on TV, and doing anything that they don’t want to do. While you would think that this would translate well to real life, it is surprisingly difficult to pinpoint. This weekend, LMM was all energy and bouncing around. She was also really annoying, yelling gibberish songs and not listening to us. It wasn’t until late Saturday that we realized what was wrong. Since it is SO HOT outside, she hasn’t been spending as much time playing outdoors as she usually does. She was literally running in circles Saturday afternoon, which I think was the last puzzle piece. She wasn’t miserable, but she wasn’t having FUN, which for her is getting outside or running around and playing. We set up a little splash pool in the backyard and let her play in that for a while, then chased her around the house once it got too unbearable to be outside. Her mood improved and she paid more attention to us.
  4. Building skills. Your Sim needs to build their Skills to progress in their job and in their status. Little kids have to be taught to walk, use the potty, etc. Adults have to practice speeches to boost Charisma, work out to build Fitness points, etc. The same holds true in real life. You have to build skills and improve on them to succeed in most aspects of life. For LMM, we are focusing on fine motor skills that will improve her writing later on. We try to blend this with the Fun category so she enjoys it, such as painting a picture or coloring nicely. Coloring inside the lines may sound like a cliché, but it helps fine motor skills to grow as  the child controls the movement of the crayon with more precision.
  5. The last thing is the timed Life Stages aspect of The Sims 2. If you know how to do it, you can hack into the coding of the program and pause your Sim in any Life Stage so that you have time to get them where you want them. For example, you might have a Baby Sim and in 4 days, the baby will turn into a Toddler Sim. A week later, the Toddler will be a Child, then a Teen, then an Adult, etc. Certain people like myself might want to freeze time so they can perfect their Sim and max out all their Skills before they move on. This doesn’t happen in real life. You have to work with the time you have.

The Sims is a fantastic computer game and I don’t even know many hundreds or thousands of hours I spent in the glow of the screen as I shepherded countless Sims to glory (or death, because I wanted to have ghosts in my fancy mansion). And even though it is just a game and all of my points above are also common sense, I’m a visual person and I thought the parallels to gameplay and real life were interesting. I hope this has been amusing and entertaining for you. And maybe, if you find yourself feeling “yucky” one day and you can’t pinpoint WHY, go through your Sim-Meter and see what is low.

4,000 views?!

Just checked my stats and I’ve gotten over 4,000 views since I started this little blog 4 years ago. What originally started as a way to update the many friends and family members who were asking about Little Miss Minion while she was in the NICU has turned into a way to share my views and experiences with prematurity, hydrocephalus, the NICU, and now, going back to school to be a NICU nurse.

Little Miss Minion is so much different than she was a year ago. Someone at work asked me this week at what age does your baby become a little kid? I looked back through my pictures and I think it’s between three and four. At three, LMM still had some baby face going on. Her cheeks were chubby, her movements clunky. Now, she’s got a kid face, never stops moving or talking, and says things like “only for babies.”

Some quick 4 year old facts about LMM:

Favorite thing to do: eat

Fave movie: Greatest Showman

Fave beverage: milk

Fave song: never enough from Greatest Showman

Fave thing to do: go to the park or color

Likes: counting to 10 with me in Spanish and French in the car. Asking “what’s that?” Snacks.

Dislikes: bedtime. Naps. Coffee (I drink coffee in the car and she’s always telling me that coffee is “yucky”). Thunder.

Thanks for reading and hopefully I’ll be able to update more since classes are out for summer!